Re: Roche has signed an agreement with Seaside Therapeutics to develop new treatment

[Guest guest]

helen_foisy wrote:

> Roche has signed an agreement with Seaside Therapeutics to develop new

treatments for autism and other neurodevelopmental conditions such as Asperger's

syndrome.

>

http://www.inpharm.com/news/173056/roche-signs-research-deal-autism-spectrum-dis\

orders

Helen, it's the dissemination of articles like this one which *fosters

ignorance* of what autism really is.

---------------------------------

" FXS’s symptoms resemble ASD, and their underlying mechanisms may be

similar, the companies believe.

The most commonly inherited form of autism involves the gene encoding

fragile X mental retardation protein (FMRP): loss of this function

disrupts signalling between neurons, leading to brain abnormalities. "

---------------------------------

Roche itself - the *company* - seems ignorant of *both* autism *and*

Fragile-X syndrome. It's their problem of course, and I hope they lose

their financial shirts through their mistaken understandings.

I'm more concerned over uncritical readers picking up misinformation.

Yes, the readers on ASPIRES are - like the kids in Lake Woebegone - all

" above average " .

That said, they all mostly don't have the backgrounds to interpret the

claims Roche seems to have made.

The chromosomal fragile site FRAXA is associated with the fragile X

syndrome, and it is the *most common* cause of hereditary mental

retardation. That is, it exceeds even the frequency of Down syndrome.

Then too, a Fragile-X person may be said to have autism-like

characteristics, but never (correctly) would be diagnosed as autistic in

the sense meant by the DSM.

Etc., etc., etc....

- Bill ...AS; retired professional biologist

--

WD " Bill " Loughman - Berkeley, California USA

http://home.earthlink.net/~wdloughman/wdl.htm

[Guest guest]

Bill,

> > Roche has signed an agreement with Seaside Therapeutics to develop new

treatments for autism and other neurodevelopmental conditions such as Asperger's

syndrome.

> >

http://www.inpharm.com/news/173056/roche-signs-research-deal-autism-spectrum-dis\

orders

>

> Helen, it's the dissemination of articles like this one which *fosters

> ignorance* of what autism really is.

<snipped>

LOL! Didn't I *say* " don't shoot the messenger? "

Are you suggesting we practice censorship for the sake of the odd concrete and

literal thinker, or do we raise the bar a little higher? I give our membership

credit for a lot more intelligence.

Many readers (like myself) may not have an extensive clinical education or

background in working with special needs adults but we have *lived* in this

world and our communities and we are quite capable of critical thinking.

Some members will probably skip over this article entirely, but those who read

it, especially those who are advocating for a loved one, or are self advocates,

and self advocacy groups like ASAN, would want to know about " research " like

this, for a number of reasons. ASAN's concerns are mainly ethical, but also to

raise public awareness that the charity dollars you donate to large autism

groups, and the dollars you lobbied the government for to be directed towards

autism, may not be going to support the autistic and their families, but rather,

to research like this.

PT Barnum said there's one born every minute, but thinking folks know that Big

Pharma wouldn't be pursuing this if there was no potential to make gain a

profit. Desperate parents may cling to the hope promised by snake oil salesmen,

but the reality is that autism can't be " cured " - especially not with a pill.

It's what a person IS. Groups like ASAN make that very clear.

That being said, it's good to have someone with the professional background who

can explain " why " such research is flawed. Many members here with more than a

passing acquaintance with autism will know that proceeding from the premise that

what helps Fragile X will also help autism is wrong. By now most of us have

heard about the 2.3 billion dollar settlement against Pfizer Inc. for promoting

off-label use of medications. A cautionary tale for Roche. But I digress. Again,

to have someone explain exactly " why " it is wrong without having spend hours

with " Google " is a time saver. Thanks for that. And we will continue to pass

these items on for comment.

- Helen

[Guest guest]

Newland wrote:

>

> Helen, it's the dissemination of articles like this one which

> *fosters ignorance* of what autism really is.

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> Hi Bill:

>

> If no two people are a like with autism, how can you actually define

> AS or say it is this or that?

, *I* don't define autism (you know that) -- the DSM and/or ICD

does. Those are the " dictionaries " used by professionals, governments

and anyone else who wants to be correct in what they write or say. You

know that too.

> You can address how AS effects you but

> not others or am I missing something here?

You're missing something.

> Do you are agree that no

> two are alike?

There's nothing to agree *with*. It's a sometimes useful popular

catch-phrase, but *no way* part of a useful definition of AS. The

" fact " has never been proven; likely is unprovable.

It's just as useful " defining " perfectly ordinary people -- in the

same sense that " no two fingerprints are alike " , or " no two DNA patterns

are alike " .

> Maybe that is where the discussion should start?

" The discussion " started years ago, with Kanner, and later Asperger. It

*continues today* in clinics, research labs, ...and sometimes here in

ASPIRES.

But ASPIRES - or any other non-professional forum, *or the media* -

should *not be* where clinical and behavioral *definitions* are made.

That would make the dust-up following the Tower of Babel look trivial.

- Bill ...AS; retired professional biologist (clinical/research genetics)

--

WD " Bill " Loughman - Berkeley, California USA

http://home.earthlink.net/~wdloughman/wdl.htm

[Guest guest]

Hi ,

I meant it in the context that I believe Bill meant in his reply to me, but I

had edited out the rest of his post for brevity. When Bill said, " I'm more

concerned over uncritical readers picking up misinformation, " yes, that's always

possible, but by posting these widely circulated articles here for discussion,

and getting a wide variety of opinions, folks can gain a broader perspective. It

may or may not change their own biases, but at least they will be more informed.

Even debate is healthy, as long as no one tries to dominate the discussion or

control the direction of this list. That's the List Owner's prerogative

's formula has worked admirably for over a decade where other groups like

this have failed.

Most members here are savvy enough to examine what they read with a critical

eye. I don't believe this article is going to make folks think, " yaaay,

someone's going to make a drug that can 'cure' autism, " or promote

misunderstanding about what autism really IS. My own jaded response upon reading

it was, " hmmm, follow the money on this one folks.. "

- Helen

>

> helen said:

>

> Many readers (like myself) may not have an extensive clinical education or

background in working with special needs adults but we have *lived* in this

world and our communities and we are quite capable of critical thinking

>

>

> me here:

>

> I am unsure if she means this critical thinking in the manner i understand it.

Critical thinking is a different way  thinking....a whole different way of

thinking.

>

>

> Bill and others would have a clinical approach.....the two  thinking styles (

critical versus clinical) can be used to read the same piece of information and

get different interpretations.

>

>

> 40 AS critical thinker wannabe..damned biologist by default.

>

>  

[Guest guest]

Newland wrote:

> Bill:

>

> OK. So what advise would you give families or those with AS that are

> struggling?

Get help -- *of course* !!!

> If it is not a viable diagnosis, just part of the human

> condition that does not need a label or support services?

I did not say or imply that.

> How can you have it both ways?

I can't; neither am I foolish enough to try.

> If it is just part of the human conditions,

> the label and services will go away.

Not likely. Other bad parts of the human condition don't, nor do

services necessarily 'go away'. Some services improve, ...given enough

attention.

> How do you allocate services and

> support for a part of our population that you see as just an

> extension as what we believe TODAY as normal.

The same way we already allocate resources for wounded veterans,

homeless people, accident victims, " special needs " , etc etc etc... Etc!

First we *identify a problem*. A real problem, not conformance to a

label - a real problem. Then we devise a solution. Then....

You know all this . You're baiting me. Not nice.

- Bill ...AS, tired of the 'Baiting Game'

--

WD " Bill " Loughman - Berkeley, California USA

http://home.earthlink.net/~wdloughman/wdl.htm

[Guest guest]

How do you allocate services and

> > support for a part of our population that you see as just an

> > extension as what we believe TODAY as normal.

>

> The same way we already allocate resources for wounded veterans,

homeless people, accident victims, " special needs " , etc etc etc... Etc! First

we *identify a problem*. A real problem, not conformance to a label - a real

problem. Then we devise a solution. Then....You know all this . You're

baiting me. Not nice.

Bill, is not baiting you. She really wants to know. And I do as well. And

I hate to say it but if we are going to allocate resources to autism the same

way we allocated resources for wounded veterans, homeless people, accident

victims, special needs, etc. then we need to do a lot better. You have been very

good at pointing out what autism isn't, and you've actually changed my thinking

in some ways, in that regard. We would love to know what you think it *is* and

how the difficulties that arise from it would be properly addressed if you were

in a position to design the algorithm.

- Helen

[Guest guest]

,

Thanks for this background information. You certainly know yer stuff

- Helen

----------------------------------------------------------------------

Re: Re: Roche has signed an agreement with Seaside

Therapeutics to develop new treatment

In discussions of any disability model, it might be useful to look at the World

Health Organization's work on defining disability. It was completed by 2001

after considerable revamping of a twenty year old definition which the editorial

committee at WHO determined was out of date. In order to avoid definitions that

were ethnocentric, the WHO for the first time introduced and approved

considering the use of social context criteria to the definitions for ANY

disabilities because of the " linguistic and distorting cultural load " imposed on

certain disabilities' definitions by language and regional artifacts,

world-wide. Such older criteria made the uniform reporting of prevalence figures

of certain disabling conditions virtually meaningless. The US medical

establishment and scientific community is NOT the most advanced community when

it comes to this kind of thing. As a matter of relevance and for protecting

long-defined turf, much of the discussion of disabilities in this country has

been co-opted by powerful medical industry interest groups and deep-pockets

lobbiests interested in keeping things sufficiently confused and the money

flowing to " traditional " defining and research institutions. The WHO has

definitely taken a " way out lead " while dealing with this phenomenon, and so far

has resisted insistance of the US medical industry to stave off progress in

coming to wider understandings about what disabilities are, and how they are to

be dealt with as matters of public policy.

I followed the development of what was then called the ICIDH-2 criteria closely

at the time it was being vetted for last round of international comments before

the WHO definition of disability was passed by the WHO International Congress in

Geneva in 2001.

Do consider starting your search on definitions of disability, by accessing a

helpful site co-maintained by VERA and the US Department of Justice. The WHO's

site isn't really that helpful as it's full of gobbledeegeek.

http://www.accessingsafety.org/index.php/main/main_menu/understanding_disability\

/a_new_definition . Consider clicking on this page's links to a simplified but

helpful history of the definition of disability at the links on evolving

definitions, contrast of approaches, and benefits.

And then " go " from there.

N. Meyer

[Guest guest]

<snipped>

> > Okay. Do you think there ever will be? (a biological marker for autsim)

>

> No, I don't. ...Not in the senses implied by today's " disability model " of

autism.

>

> I *do expect* some biological markers one day will be found among *some*

groups of autistic people. But *if found*, I expect those won't be markers for

autism _per se_.

>

> They'll identify *co-morbidities* of autism, much as Sickle-cell or

Tay-Sachs today are co-morbidities respectively for *some* Black or Jewish

" varieties " of humankind.

Interesting. I hope maybe I'll see more concrete proof in my lifetime, but I

suppose the understanding will always be evolving. I know what I've seen, I know

what I've experienced, and I can certainly spot another Aspie at 50 paces, but

every one of us is so *different* (yeah I know, obvious...)

> >> Using an *autism as disability* model, there is yet *no* " necessary

> >> and sufficient cause " for autism.

> >

> >Okay. And if I understand what you have inferred in posts where you call some

of the research into question, you doubt there ever will be?

>

> I guess you meant " implied " .

Yes, I meant implied, that's what I get for trying to write at night, LOL.

> Yes, I do doubt there ever will be. Because - in my view - the only " necessary

and sufficient cause " of autism is ordinary (and well understood) *evolutionary*

processes. Which are the " cause " for all of us.

>

> Please note an *important distinction*: Autism as a recognizable

physical/medical/neurological entity is one thing. Autism-like behaviors *as a

co-morbidity* is quite another.

I agree .. mostly ..

> The former has no identified and agreed upon " cause " . Often it can be

recognized readily enough. But - like " porn " - it has no agreed upon

" satisfactory " definition.

>

> The latter *might* accompany e.g. Fragile-X syndrome or Rett syndrome, inter

alia, but are *not* necessary and sufficient conditions for either syndrome.

Here is where I get stuck. This isn't to say that I can not be persuaded, but it

would take a lot of convincing arguments and proofs. There are some traits,

behaviors, etc. that are common to just about ALL folks on the spectrum, some

good, some not good, and yes, much depends on environment, but still, while I

agree some tendencies or vulnerabilities, eg. anxiety disorder and meltdowns may

be co-morbid conditions, others like sensory integration - now there you and I

have had many go-rounds about this, mostly over semantics but, let's just say

nearly ALL folks on the spectrum do respond a little bit differently to the

physical environment than no spectrum folks do, and I think that's inherent in

" autism. "

We also process unspoken cues differently from non spectrum folks. The older we

get the better we are at picking up on them, but if you ask a non spectrum

person how they do that, they say they just " know " or they just " feel it. " For

us, we consciously collate the incoming stimuli and, based on previous

experiences and learning, come up with the best response. Sometimes our response

may be better than a non-spectrum person's response because it's not being

processed through the filters of our emotions or " intuition " - it's fact-based

or at least based on the best probability.

We don't suspend our disbelief. Our decisions are logic driven, not emotion

driven (well, at least not for the most part, anyway LOL.) This doesn't make us

machines or Mr. Spock, we have feelings, we have emotions .. but the way we

think and do is a little different. I think that we can either say well that's

inherent *or else* we could say it's because we are deficient somehow and

therefore we compensate by relying on our memories. I prefer inherent. For us,

logic trumps emotion, most of the time. We are Simon Baron-Cohen's " systemizers "

and non-spectrum folks are Baron-Cohen's " empathizers. " And the world needs both

kinds.

(Re. Rhett syndrome and Fragile X syndrome)

> Both those are known and distinct chromosomal problems; sometimes but not

always accompanied by " autistic " traits. Both now are *defined* by presence of

the relevant chromosome abnormality - not by " traits " .

Well yes, true. And " chromosomal abnormality " is not the same as " genetic trait "

(presumably not what you meant by " traits " above - you were talking about

behavioral traits.) But when you get two folks on the spectrum having children,

often the traits and behaviors of the spectrum parents are similar or amplified

in some of the children, and in some cases lead to full blown low functioning

autism with extreme behaviors that are shared by other full blown low

functioning autistic people. What would you say has happened there?

Having gotten this far into the discussion, I want to pause a moment and say I

do hope our many new NT spouses will not feel intimidated by this discussion or

fear offending us as you come forward with your stories.

Now, back to you, Bill, the part that I get stuck on is the following .. and

bear with me as I attempt to bring this discussion back to relationship issues.

Over the years I have read so many stories on this board and others where there

is a consistent pattern of behaviors and traits that functional or dysfunctional

AS spouses exhibit, which are in my opinion, quite different from those of a

functional or dysfunctional non spectrum spouse.

Often, they are subtle, not overt, which is why the non spectrum spouse may, for

many years, feel like they are the crazy one. Their AS spouse may be a really

good person and yet, something is fundamentally lacking and without either

partner knowing about the existence of AS in the dynamic of their marriage, a

lot of damage can ensue.

While we don't have to necessarily say this is all due to AS, can we agree that

the problems arise because of the undiscovered *differences* between AS and NS

spouses? Can we also agree that dysfunctional AS often exhibit very similar

traits and behaviors to other dysfunctional AS folks, just as NS folks are

similar to other NS folks?

Now you and your wife have had a long marriage which was at one point

distressed, until you both learned about these differences. Obviously you *both*

had to work at bringing the marriage back to solid standing. Sometime I hope you

will be willing to share some of your secrets. But again, yours was a

collaborative effort with your wife.

What would you say to folks whose spouse, due to being more severely impacted by

theory of mind issues (and feel free to jump on that one if you like, that would

be interesting, and hopefully not contentious, but illuminating) is just not

*capable* of making the necessary repairs? Not because they are obstinate and in

denial (tho no doubt there are a few bad eggs) but because they just *can not*

" get it? "

The partners of these folks often do suffer from some variant of " affective

deprivation disorder. " Unfortunately, out in the real world, there are few

trained therapists who understand the nuances in the dynamic of an AS/NS

relationship that led to that outcome, never mind understand any more than the

most rudimentary aspects of Asperger Syndrome as is included in the DSM or ICD.

They might ask the non spectrum spouse, " oh, does he like trains? " LOL!!!!

There is something there Bill, definitely something. I would love to hear your

take on what has happened there, and maybe a possible remedy, as it may help

folks here who are dealing with this (but are silent at the moment.) After this

I'll try to (or you can) change the subject header if you do follow up on this

particular tangent.

- Helen